Post surgery questions

[Always worried]

Hello,
I am new to this Forum. Somehow I missed this one, and have been using a different one. Wish I had known about you sooner. This story is about my now almost 19 year old daughter.
In May 2009, her Junior year in high school, she had been complaining of abdominal pain off and on since her Freshman year. She thought it was because she is a type A personality, worrying about school. She would have an episode every now and then with some vomiting and diarrhea. It was always around the time when everyone else was coming down with stomach bugs, so I didn't think it was unusual. Finally took her to see her pediatrician again, and she decided to do blood work that led us to Barium Swallow and diagnosis of Crohns. We started seeing our Pediatric GI doctor. After a year of trying to get normal labs,with Imuran and steroids, our doctor felt she would be a good surgery candidate.
So July 1, 2010 ,she had an ileocecal resection. They took 13 inches of bowel. The surgeon said she would have been one of those kids that would have come in with an emergency bowel obstruction and that we had made the right decision. Within 6 weeks she was off to college and happy. Everything happened so fast. Now to my question. Since she has been home this summer, I have noticed that after many meals she will have to go the the bathroom within the hour. Is this normal? She is now seeing a new adult GI doctor where she goes to college. All her blood work is fine except her hemoglobin is low. Is this normal? The doctor suggested she should consider B12 shots monthly.Do other people do this? Is this a sign the Crohns is starting to show up again? My daughter doesn't seem too concerned. I guess I am having problems because she knows these doctors and I don't.

 

[DustyKat]

Hi and :welcome:

I'm so sorry to hear about your daughter but I am glad you have found your way here.

It is not uncommon for people to have this problem with their bowels after eating and it is often a result of the removal the ileo caecal valve and she may also have some bile salt absorption issues. There is a medication called Questran, it is a powder, that many find useful in solving the problem or some take oral tabs like Imodium or Lomotil. My daughter has short bowel syndrome, she had 68cm of bowel removed, and found Questran too unpalatable so uses natural psyllium husks instead and this has proven to be successful for her. She also switched to a Vegan diet as well so I don't know how much of an effect this has on it as well but she now only uses her bowels once a day. It has been a lot of trial, error and sacrifice but she says it is worth it.

My son has also had the same surgery and a similar amount of bowel removed as your daughter. His pattern bowel pattern is a little different but he is going 4-5 times a day. I notice he is now using psyllium husk also, with no dietary changes, and he said it is working well. Obviously Sarah has clued him up about it.

Your daughter should be monitored for B12 as she may indeed require injections, the terminal ileum is where B12 is absorbed. Sarah requires injections every 3 months for the rest of her life but at this point we are only monitoring Matt.

I would have her bloods tested for B12, Folate and Iron stores as it may be that deficiencies in one of these or a combination that is causing the lowered Hb reading. Also my kids GI explained that even when in remission you can have a an ever so slight blood loss, much like a dripping tap, that is insignificant in itself but over time the effect adds up. Also bear in mind that this coupled with menstruation may be having an impact.

I wouldn't be too concerned with just a lowered Hb reading. I would be very surprised if it had anything to do with a flare.

Is your daughter on any maintenance medication?

Have a good browse around the forums and please don't hesitate to ask if you have any questions. We have a Parents forum here that you may like to pop by and visit as well.

Good luck to your daughter and welcome aboard! Oh, I will move your post into the main forum where more people will see it.

Take care and I look forward to seeing you around. :heart:
Dusty. xxx

 

[xJillx]

Hi and welcome! As Dusty said, it is not uncommon for those who had surgery to use the bathroom soon after eating or a bit more frequently. Also, many with Crohn's take B12 shots. I don't think this is too uncommon either.

I hope your daughter continues to do well, and I wish her the best with her education. Try to tell her not to get too stressed out with school - stress and Crohn's don't mix well! Once again, welcome to the forum and I look forward to seeing you around.

 

[RFarmer]

Hi, and welcome

There's a large number of members here who are worried parents, just like you. In fact, there's a subforum here: http://www.crohnsforum.com/forumdisplay.php?f=49 for parents of kids with IBD.

Like my precedents mentioned: Hemoglobin problems are not uncommon. Plenty of people get B12 shots. And she has 13 inches of bowel missing, so it's definitely not unreasonable for her to have to go sooner than the average person So no worries

Nice to have you here